I just wanted to say something about my doctor

[Kara29]

It's important for everyone to understand that my doctor is the best in his field which happens to be IC and all kinds of urological surgery including neobladders, Indiana Pouches, every other pouch that exists, urethral reconstruction. Anything that needs to be done, he can do. He's done this for 35 years and is a 100% perfectionist. Although he lives in Boston and I live in Central NY and he is 6 and 1/2 hours away from me, he is my saving grace. I have his cell phone number, his home phone number, and his after hours number. When I call from NY he gets me in that day if need be. If I need surgery he will call the OR and schedule it the next morning. Sometimes he will schedule surgery while I'm still in NY and we do the pre-op over the phone. The next day I drive in and he works his magic. I know he cares about me and he knows that he is the only doc that will take good care of me and actually wants to take care of me. Sometimes when I call they will interrupt him while he is in the office with another patient and he will come right to the phone. He knows that I have seen 12 doctors here in NY and he gets so sad that no one will take care of me. THank God I am on disability and not working so I can just get up and leave when I have to. It's a BIG struggle but at least there is one person who cares. This doctor is by far the best doc to see about these issues. If he does not know the answer, he will do some research and find it or ask other doctors around the world. If I am at my wits end with my new bladder he will come up with a plan to go to the next step. He's always got a plan. Lots of trial and error but we always get there in the end. He listens to me and I listen to him. After being rejected by so many doctors between Buffalo NY, Syracuse NY, and Rochester NY, I don't care to see any more doctors anywhere else. I have to make the appointment, transfer all of my records, wait for the doctor to call to let me know if he wants to see me or not, go to see him, and then only to find out that he does not want to help me......it's all so damn heart breaking. So I'll stick with my doc in Boston where I know I will get help.

Just wanted to put a big thumbs up for my doc! :angel: :angel: :angel:


Kara

[Katrina]

Wow! He really sounds like an angel!! Thanks for sharing. :)

[emilyrose197377]

Sounds like you have a good Dr. Thanks for sharing your story.

[Babs RN]

Wow...as drool drips from mouth...What an awesome doc! I am sor thrilled that you have such a great compassionate, patient focus doc. Maybe he can teach some compassion to some of these other yahoos.

Hugs,
Barb :grouphug:

[Dixiefireball]

WOW! and I thought I had a great doctor, but yours really does go all the way!!
If I do call there has been many times (if he isnt in with a pat.) he would take the phone and talk to me. He has even returned my calls after an RN gave him my messages. I also have a wonderful doctor. we both very lucky, but still your doctor deserve two thumbs up and a gold star. lol.
I wish all IC pats could have such caring doctor like we both have.
Good doctor are so hard to come by now a days.
Best wishes always
Rhonda

[Kara29]

Well, that is a good question. I am seeking maintinence of these infections. I am seeing an infection control/infectious disease doctor in Rochester, NY. Sometimes he is helpful other times he isn't. It's hard for Dr. F in Boston to treat my infections over the phone as you need to drop off a urine sample that needs to be cultured (takes 48-72 hours) depending on the infection; Dr. F in Boston can't prescribe or do urine cultures across NY state lines as he is in MA. Hence the infection control doc in Rochester near me. Once the culture returns it tells us what antibiotic will attack and hopefully get rid of the infection. Until I find a compassionate urologist around me, this is what I have to do to maintain. Once they get rid of the infection I can go as long as 4 and 1/2 months without a new one or I can go as long as a week. It's like living your life hour by hour not knowing what is next. We can't make plans to do anything with anyone unless I feel ok that morning. We've lost loads of friends becasue of this.

As far as a revision goes....My doc and I have a plan togehter around this urethra. Wait, watch, and see how the surgeries go when he removes the scar tissue. The last time he removed my scar tissue with laser/cutting which took him almost 3 hours, it lasted a year and 1/2. I am ok with that. He just went in and did the surgery to open the stricture 4 weeks ago and I am doing well so far. He said that he lasered/cut a LOT out this time and he put a 26 french foley in place for 3 weeks to keep it open while it healed. A 26 french foley cath is the size of a skinny tampon. It was truely awful. If this does not work for as long as it did the first time, he would like to reconstruct a new urethra out of some of my small intestine.

At this point in time, I am not seeking a bag. I am not emotionally/ physically or psychologically ready for this and neither is my doctor wanting this for me. I am only 29 years old and have yet to have my babies. The neobladder allows me to have vaginal births. It's safter than a revision to a stoma or a bag.

Why am I here....simply to help others if they have questions about my specific surgery. To get some of my curiosities answered about others whom have had these types of surgeries and to seek their expeirneces with them and how they are doing. I'd like to help and be informed and learn as I go.

Before I had my bladder removed I went to 5 other specialists in the Boston area and none of them would help me. They all frowned upon having any surgery. They just wanted me to suffer through it. And then 12 other doctos here in NY whom all turned their heads on me. So going to yet another specialist in another area or state is out of the question at this time. I'm so tired of the rejections one after another after another after another. I'm not spending my money to go to another one when I have a competent doc already whom has a plan and is working with my wishes.

I am simply maintaining my neobladder and nursing it so to speak as it is. It could be so much worse. The experiences of these fellow ICer's and their new bladders is a journey and I'd like to take it with them.

Kara

[Babs RN]

Very well put Kara, quite eloquent actually. I have read your story on the ICN since I joined and am happy to finally "meet"you. I did have a question about your urethra issue, I think I am headed that way and need some advice.

Thanks in advance.

Hugs,
Barb :grouphug:

[Dixiefireball]

I also have to go see an infectious disease doctor NOV 8 @ 3p.m she is to try to help my uro get my infection under control since i was having uti back to back, but lucky i have went four weeks without one. (wow! i went four weeks that is a record for me in the pass year and half lol)
Kara I thanks its wonderful your back and helping people. that goes to show your truely and angel in my eyes and i'm sure many others.
God Bless you
Rhonda

[Kara29]

I want to extend my thanks to all of you for hanging in there with me. It's nice to know that I am not alone and that so many of you understand where I am coming from and what I am talking about. I will continue to offer up anything you all may need. I have tons of stories about the past 3 years and tons of experience with this new bladder.

Thank You all for being here :grouphug: :kissing:

Love and Hugs,

Kara